just wondering do the storm clouds, rain ,effect you or increase your pain cause pressure in your ear and just create chaos in your head and face does it cause you any physical effects. If so what do you do to make yourself feel better or releive your pain if anything just rant away
Hey Toni,
I agree with Ro & Maeve - the barometer issue is a hard one to manage. I “try” to compensate a little by staying indoors as much as possible (maddening in itself) and running the de-humidifier in my airconditioner. It helps slightly by reducing the relative humidity inside my home. Taking a slightly increased dosage of the anti-convulsant you’re on is also a great suggestion. Other than that - it’s just a matter of waiting the storm season out.
Ironically, I love storms. Have done for even many years prior to my getting TN this badly - my friends always think I’m just a regular human barometer - but I too, my body reacts with pressure & humidity changes - so I’ll always know just when to check the radar and get my chickens and ducks away - make sure the car’s in the garage cause I even accurately guess on whether or not we’ll get hail. That is accurate enough that my neighbours even see my battening down - and run off to do the same themselves 
this always makes me laugh.
I love to sit outside and watch the storms approach, starting before you can even see it. I’ll get out with a folding chair, nice cool drink and the Dogs and watch the lightning start and listen to the rumbling thunder. I try not to think about how it’s gonna affect my face - as it’s hard to hate something when you also love it.
Cheers ~ Kerry.
Yes I get the pressure in my ears and it creates pain and throbbing and I have to buckle down for a possible attack. I don’t think there is much I can do. I try to distract myself and if that does not work I go lay in a dark room and cover myself with a big fat comforter until I feel better. LOL my husband calls me a cocoon.
Also I have not gone for a real swim this summer I just floated a few times because I can’t go under the water anymore due to the pressure.
(I am talking in past tense, I have not been on a plane since this got worse)
Short fights (FL to NJ) on a plane cause pressure and a mini attack on the plane or a possible major attack after I get off.
(FL to CA) OMG Major attack on the plane, I freaked everyone out! My poor daughter was with me and I almost gave her a heart attack! Everyone was looking at me! I was screaming and crying "I need to get off! Let me off! I swear if they gave me a para-shoot I would have jump with out knowing the consequences just to get the heck off the plane. Well the nice flight attendant came to give me 2 Tylenol, OMG if looks could kill, I bit my tongue because she was trying to help. Well lets just say they let me and my daughter off the plane first. I ran out of there like a bat out of hello! I could not hear anything for hours and I yelled, I could not speak.
This was the first time I met my older half sister on my dads side and I did not know she had, had Acoustic neuroma when she was younger (An acoustic neuroma is a noncancerous (benign), often slow-growing tumor of the nerve that connects the ear to the brain.) and had the surgery that left her deaf in that ear.
LOL when we met I am sure people could tell we were related with the airport salutation screaming match!
Things I try to stay away from
barometric pressure
underwater swimming
air planes
Diana
In a word yes, it does, it gets me too, its worse when I am having my period too, and just before, during the PMT.
I am with you on the flying too, short flights are ok, not a problem, but longer flights when the pressure gets more are a killer for me, even with taking extra fast acting tegretol.
I am fine on the way up, fine at cruising hight, but the second we start to decend my ears start screaming, sweat dripps off me, hot and cold , shakes, nausea, incredible pain levels, its a nightmare.
Apparently the moon can affect it too, it can make neuralgia much worse in people and in animals, not that I have ever written it up to check the dates, I believe horses can get bad TN too, but now I am rambling so I will bid you all a goodbye.
Lots of love
Gracie x x x
Hi!
Cloudly days muck me up. Not with TN (as I haven’t been diagnosed, as this pain is all new to me!) but with my ‘other’ strange neurological problems.
Grey cloudy days are usually bad for me. No idea why though!
I’ve got wicked problems with the barometric pressure changes and storms. We recently had a drastic temperature change with rain (went from 70s and sunny to 40s and raining) and I ended up in absolute misery with both a severe migraine and excrutiating TN pain. It’s gotten to the point that my boss knows when I’ll be in more pain than usual and/or call out or leave early from work (and I’ve only been there for a year!). I tried going in the morning after the weather change I was just talking about and when I decided I just couldn’t do it he was like “I was wondering what you were even doing here!” To deal with the pain, I usually do one of 3 things. I will either 1) sleep (if possible…and when it is, it’s the best treatment), 2) ice my face or 3) heat my neck to relieve tension. Sometimes I’ll end up doing a combination of these things (but not all of them at the same time) with varying levels of success.
I don’t have TN as far as I know. Just found the site while looking for alternative forms of sinus relief.
But here’s what works best for me when the barometer goes up and down.
Prescription for Provigil.
This lets me continue to function during the bad-weather days and not waste my time sleeping. And when I do have to take a nap because of the air pressure, I wake up 6-10 minutes later and the sinuses are open. They open because the brain triggers an adrenaline rush. (My theory, despite what my doctors say, is that my sinus swelling causes oxygen deprivation and lethargy - hence the adrenaline kicks in)
Synthetic adrenaline (the blue Sudafed PE - not the original Sudafed) also clears me right up, but too many of those per month and you get heart palpitations which are not funny.
Bitter Orange extract pills will do the same, but they will also give you heart palpitations if you take too many.
Midrin also knocks out my stormy-day headaches. Many times I have to take 4 (which is the daily max).
The triptans (imitrex, etc), although great at other times, simply don’t work for these types of pains.
Also, hot salsa, or pepper jelly beans (ass-kickin makes some good ones), used to clear me up.
Tiger Balm rubbed on the upper lip clears up the sinuses, but you quickly develop a tolerance and it stops working.
Sinus Buster nose spray helps sometimes, but it doesn’t open the deep sinuses where the pepper can’t reach.
Hope someone gets relief from one of these tips!
Hi Diana
I am very affected by barometric pressure, but more than that it seems that seasonal changes are a bitch for me. I had an MVD in July 2005 and have been relatively pain free since then, except for the month of April! In April '07, '08, '09 and now 2010 I have a relapse. Last night I had a really rough time and low and behold I realized it was April 1st! Go figure! I know the weather turned really warm yesterday and a front of high pressure has been moving in quickly. I have no other explanation. I also know that around my menstrual cycle, when my hormones kick in I can have some TN reaction as well. I don’t know anyone else who has these seasonal issues with TN. BTW, one of my worse attacks was in an airplane back in 1992. Have not been back on a plane since. The car is my mode of transportation these days for traveling. Wising everyone a pain free day!
Ella
Diana Parker said:
Yes I get the pressure in my ears and it creates pain and throbbing and I have to buckle down for a possible attack. I don’t think there is much I can do. I try to distract myself and if that does not work I go lay in a dark room and cover myself with a big fat comforter until I feel better. LOL my husband calls me a cocoon.
Also I have not gone for a real swim this summer I just floated a few times because I can’t go under the water anymore due to the pressure.
(I am talking in past tense, I have not been on a plane since this got worse)
Short fights (FL to NJ) on a plane cause pressure and a mini attack on the plane or a possible major attack after I get off.
(FL to CA) OMG Major attack on the plane, I freaked everyone out! My poor daughter was with me and I almost gave her a heart attack! Everyone was looking at me! I was screaming and crying "I need to get off! Let me off! I swear if they gave me a para-shoot I would have jump with out knowing the consequences just to get the heck off the plane. Well the nice flight attendant came to give me 2 Tylenol, OMG if looks could kill, I bit my tongue because she was trying to help. Well lets just say they let me and my daughter off the plane first. I ran out of there like a bat out of hello! I could not hear anything for hours and I yelled, I could not speak.
This was the first time I met my older half sister on my dads side and I did not know she had, had Acoustic neuroma when she was younger (An acoustic neuroma is a noncancerous (benign), often slow-growing tumor of the nerve that connects the ear to the brain.) and had the surgery that left her deaf in that ear.
LOL when we met I am sure people could tell we were related with the airport salutation screaming match!
Things I try to stay away from
barometric pressure
underwater swimming
air planes
Diana
Oh my gosh last night was a very bad night! it never dawned on me to look at seasonal changes. Makes since though since it has been about 85* the last few days. ok and to top last night next friday i travel from Tennessee to Maine you guessed it by plane,
please help me with any possible suggestions!
Melissa
Absolutely, the change in barometric pressure affects us! In spite of my ex-neurologist who insisted that was all in my head (yeah, ya THINK??). I live on the side of a mountain, and sometimes driving back up from town sets me off. It is only a 2000 ft altitude change, but that’s enough. Especially on low pressure days. I think it may have to do with the low pressure allowing the arteries to expand just enough to throb a bit harder against the nerves. I mostly try to avoid the typical triggers (wind, wearing glasses or trying to apply make-up). I have this wonderful soft bag filled with lavender and something (rice?) that I can heat in the microwave and then apply to the side of my face.
Like Kerry, I have farm animals to take care of, which is really difficult on bad days. I usually just try to get the feedings and mucking done as quickly as possible so I can come back inside and lie down.
I’ve got to find some of those hot pepper jelly beans that David mentioned, I didn’t know they made such a thing! I love the hot stuff.
For sinus problems, you might try a neti pot. I have something like that, except it is a squeeze bottle that I fill with warm saline solution (sold at any drug store). You bend over the sink and gently squeeze the solution up one nostril until it flows out the other nostril. I know, it sounds gross but it feels wonderful afterwards. This really helped me because our whole mountainside was burned a few years back by an arsonist, and we still get soot in the air that ends up in our nose. This saline flush is also great if you are bothered by pollen.
I am so sorry for those of you that have to fly. I think I’d lose what little is left of my mind!
Hormones definitely play a part, for us gals anyway. My poor husband now gets to deal with my PMS and TN! At least I’m lucky enough to have a guy who believes PMS is a real condition, unlike many men I’ve known. I joke about why we get bitchy during that time, it is an increase of testosterone, so during PMS we just act more like MEN! The rest of the time, I’m sure I am such a delight to live with (HA!).
Well, that’s enough ramblin’s… hope everyone has a pain-free day.
Oh my word YES. I live on the Oregon coast and every day is a gamble with the weather. I have a bag with those beans in it you heat up in the micro, and I place them over my ear, or just lay on it. A heating pad will do the same trick, just dont burn yourself by falling asleep. And just recognizing that those are goig to be bad days take good care of yourself.
Barometric pressure does make me have more pain too. I learned that there is an actual reason behind this. The change in barometric pressure takes more oxygen out of the air, our body then realizes that. When there is a problem in our body, such as TN, we get more pain! Our body is trying to get more oxygen at this point.
At times I think I would do better at predicting the weather than the weather channel haha. I have never really found anything that made the pain any less intense. BOO!
Thank you for posting this. I am the same way, even after having MVD a little over a year ago, the residual pain is the worst during storms or seasonal changes. I always think it’s a good thing I had the MVD, or I’d be in a tremendous amount of pain again. Right now, it’s tolerable, but is beginning to occur on the opposite side of my face.
I used to not fly because of the pain I experienced when the plane was going up and down but my neuro told me to take two percocets,one Ativan or vice versa and then during the going up and going down I drink water through a straw until you are all the way up or until you have landed
also I live in CA so I go to tahoe with my family every year which is way way up in the mountains and it causes me crazy amounts of pain during the drive and the whole time I am there, not not fun!!! But my neuro gives me a pretty strong dose of steroids to try and control the inflammation I get when I go way the hell up to tahoe or way the hell up in the air and experience major inflammation as a result
Toni,
It is positively worse when a storm front is coming. And we have one coming in tomorrow and I am having a worse day but not a really bad day today.
Liz
It really throws me for a loop...even after my Bilateral GKR. Although it still gets the best of me indoors - I try not to leave the house during certain weather (especially when it's windy). I always know there is a great chance that I will have heck to pay, otherwise.
I had MVD surgery Nov 2013 and went almost 9 months with only small irritating sensations at times. Then mid July 2014 flew to Seatlle. Had a great time there, feeling the best I've felt in a long time. One week after returning bam, the electric shocks started again out of now where...or were they? My ear had been hurting for several days which I knew was from the plane, but from reading your posts I realize it may have been a hint of what was to come.
I was very frustrated thinking maybe the plane ride cause my flare up, and am back on anti-seizure meds and a little Roxicat at bedtime so it doesn't wake me up at 3 am. It is all evening out and I am hoping that it will go away again. I am hoping against hope that the flight caused the flare up, and wonder how long it will take for it to subside again. I will be very afraid to fly ever again.
Pressure and humidity sets of my TN like crazy.
Does this happen to anyone else??
Yes I live in the crazy north east of USA where one never knows the weather in winter or early spring. When a front is coming in I have pressure in ear and tongue hurts. I am ok when weather is good and in summer.